Скачать или смотреть Zoey's Song

Mom and Dad playing "Zoey's Song" for Zoey's grandparents for the first time after bringing her home from BC Children's Hospital, where they lived for 4 months after her birth. Zoey was diagnosed with Congenital Central Hypoventilation Syndrome in December 2020, which means that she cannot properly regulate her breathing. She is currently working to increase her time off the ventilator during the day, though she will likely require ventilatory support while sleeping for the rest of her life. Zoey had tracheostomy and G-tube surgery soon after her diagnosis. She is now a year old and she's happy and healthy at home.

CCHS is an extremely rare disorder. There are many other health risks and complications associated with it, beyond the need for ventilatory support. The heart, bowels, and eyes may be affected, and there is a risk of developing cancerous tumours and having cognitive difficulties.

Please consider donating to the CCHS network foundation to help support people with CCHS. Researchers are currently working to find a cure!

https://cchsnetwork.org/get-involved/...